Posts: 15

Topic: Avastin

Hello All,

I am new to the site. My father was diagnosed with stage 4 Cholangiocarcinoma back in October. They said there was no hope and were going to proceed with palliative treatment. He is only 56 and healthy as could be so we refused to take "palliative treatment" for an answer; we wanted curative. We are currentley seeing a Dr. in Houston and one of the medications he has him on is Avastin. Has anyone ever used Avastin?

I will note that the doctors who initially diagnosed him at MD Anderson said Cholangiocarcinoma was a "differential diagnosis" and they were treating him under the umbrella of gastrointestinal cancer. I guess his case is very rare.

Re: Avastin

Hello Lauren and Welcome to the Family but sorry you had to find us. IF you go to our research space at the top of the page and type in Avastin you can find some posts that may be helpful. I can't help with that personally. Is he being treated now by MD Anderson? They are very good, one of the best. Can you tell us a little more like where the tumor is? I would make a list of questions to ask the doctor and there is never any harm in getting a second opinion. I know it is all overwhelming in the beginning but with reading and learning you will become a strong advocate for your dad. The fight will over take the fright and it sounds like you are already on the road. Please feel free to visit often.

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Avastin

Thank you for your response Lainey!

He is not currently with MD. They wanted to treat him with Gemzar and Platinol and gave him only a few months. We wanted a more aggressive treatment plan so we did some research and found a doctor in Houston named Dr. Burzynski.

MD Anderson said he had unknown primary-Stage 4 Adenocarcinoma of the liver with a 6 cm mass on medial lobe of liver. PET scan & MRI showed small distant metastasis to Iliac bone and T-10 vertebrae, enlarged lymph nodes around pancreas with no notable signs of pancreatic involvement and no colon involvement. Differential diagnosis is Cholangiocarcinoma.

At that time his tumor markers were at 215 (4 months ago) they are now over 1800 and the recent PET scans do not show much improvement.

I'm just wondering if anyone else has ever used Avastin or heard of it and if you are able to switch treatments once you have already started another. We are just so overwhelmed. I will search this site as you instructed.

The cancer came out of no where. They said it is extremely aggressive and spread very quickly. Very devastating.

Re: Avastin

Hi Lauren,

Welcome to the site, although I am sorry that you have to be here. I can't help you with your question regarding Avastin as my dad never had that, but I wanted to join Lainy in welcoming you here. I am sure that someone will be along soon who will be able to share their experiences of Avastin with you.

Please come back often as you will get so much help and support from us all here. Feel free to ask any questions that you have as I know that someone will be able to answer them for you.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Avastin

Re: Avastin

Hello Lauren.....Avastin, a cancer medicicine, interferes with the growths of cancer cells. It hinders the formation of new blood vessels in the tumors thereby, slowing the growths of the tumor. Generally, it is given in combination with cancer drugs. As mentioned, there are plenty of discussion regarding Avastin some, with very positive responses. For a long time insurance companies refused to cover the treatments to patients with Cholangiocarcinoma however, this may have changed by now. Good luck.Best wishes,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Avastin

Lauren,the treatment of choice for cc is gemcitabine plus a platinum drug like cisplatin.Realistically all chemo given for this type of cancer is classed as palliative because it is not really a cure but a buying extra time scenario.In some people the chemo doesnt work and in others it will prolong their life and or relieve symptoms. Surgery is the only option that can truly be called curativeYou can research on this site,good luck. Janet I think it is the word "palliative" that is offputting

Re: Avastin

Lauren sorry to hear about your dad my sister has this awful disease refer to my introduction. it is very overwhelming and at the moment we were told 11 months from diagnosis for her and she is only 30 like everyone says dont give up and fight ask questions etc i found too that there is not much information so i use this sight and tried to read as many peoples things that i can to see the different treatments etc. i put my sisters details of her diagnosis (eg the big words) in the search section and then read anyones blogs with similar stuff. this unfortunately for me gave me many answers to questions that were unanswered. my sister too was told pallative and i hate that word but thats what they use she just had her first wave of chemo and her liver shrunk 20% the drugs she used were listed on magic quote. she just had ray for her mets on her bone that are over 16cm and the ones in her back they wont touch. unfortunately i need to go but i iwll try and talk to you soon. hang in there keep fighting. and good luck.

Re: Avastin

I had the same pallative vs curative issue. Let me tell you what my doctor said. Basically, with cc everything is considered pallative since chemo doesnt cure it. That does not mean you are not working on a curative solution. The tumors can shrink enough for a curative surgery. So I was told not to get too caught up in the pallative/curative distinction since it is a label but not the goal. You need to be realistic and understand you will not likely be cured by chemo so calling it pallative is ok..

I had Avastin. I tolerated it well. It did not work for me. The doctors in Sweden (perhaps all places, though i dont know) believe that the response to Avastin is often dependent on what type of KRAS you are. If I remember correctly, the tumor is either classified as wild or mutated and mutated responses better to Avastin and wild type respond better to Erbitux, a similar drug. I dont know if this is "fact" or their observations or just a wild hair my doctors have about it, but they do believe kras plays a part in the medicines effectiveness.

Re: Avastin

My mom was also diagnosed in October. She just started Avastin yesterday in combination with Oxyplatin and Gemzar. This will be her second round of treatments. The first round was Cisplatin and Gemzar. Unfortuntately, she did not get any shrinkage with these drugs. Hopefully she responds better to the new drugs. She is stage 3b (I think). She is seeing one of the oncologists at MDA in Houston.

Re: Avastin

Lauren,

Sorry to hear this diagnosis. There is hope to live well together with cancer.Is your dad on Avastin only? or it's a combination with Gemzar. I heard Gemzar+Avastin is clincal trial for Cholangicarcinomar in Mass General cancer center. You may get more info from there.

My wife has been diagnosed with this cancer last october. she was under Gemzar+Cisplatin for 2 months, the CA19 went up from 600 to 2800. she swithed to Gemzar+abraxine for another 2 months, the CA 19 stablized at 2200. Our Oncologist is adding Avastin to her chemo last week. We will let you know the progress in next few weeks. I trust our ocologist and he is one of the best in this field.

Re: Avastin

Hi Bill,

My father is taking two medication through IV- Avastin (800 ml twice a month) and Zometa (5ml once a month). In addition to that, he is taking several oral medications: 1. Xeloda 500mg 2tablets 2x a day-2weeks on and 1 week off.

2. Rapamune 2mg- 1 per day

3. Zolinza 100mg-1 per day

4. Sprycel 50 mg-1 per day

5. Nexavar 200 mg. - 1 per day

This does not include his blood pressure, acid reflux, thyroid, pain, and nausea medicine(s).

You wouldn't believe that 5 months ago he was a healthy 56 year old man who ran several miles everyday and enjoyed hours of yard work.

I hope your wife responds to the Avastin. This is a scary cancer, and I appreciate your response and support. The site is amazing; I am so glad I found it.

Re: Avastin

Hi Bill! So good to see you again? How is everything going? When the time is right for you we would still love to meet. I have thought about you often.

THANK YOU FOR LOVING ME! Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Avastin

Lauren:

Thanks for sharing the treatment info. we visited oncologist today. I want to share our new Chemo with you. it's FOLFIRI + Avastin. once every 2 weeks.

we were runing a rolling coaster in the past 4 months for my wife's treatment. she has tried two combinations based on Gemzar. it seems Gemzar+Cisplatin (2 months) doesn't work for her. she switched to Gemzar+Abraxine for 2 months. according to this week CT result, 3 of total 6 tumors are shrinked, the other 3 are enlarged. there is no spread to other places. our oncologist has sent her tumor sample for Molecular profile analysis. According to the Molecular profile report, My wife's tumor should have response to Irinotecan. That's why our oncologist suggested the new regime.

Lainy:Thanks for your kind invitation. I talked to Lulu about Teddy's miracle fighting story. it is very encouraging. she wants to fight and see our two babies grow up. we will visit you once she feels better in the new Chemo.

ThanksBill

In our today's visit, our oncologist decided to give FOLFIRI + Avastin to my wife who has been treated with Gemzar based drugs for 4months. I was wondering who else has received the similar treatment. I searched the whole forum but only find this link. Do you have any more info about treating Cholangiocarcinama with FOLFIRI based combination?

Re: Avastin

Hi Bill,

Please keep me posted. We have been doing the Avastin for about 4 months and this month doubled the dose because my father turned very yellow with jaundice and had to have a stint placed in his stomach - the cancer was still spreading. The large tumor on his liver significantly shrunk, but then a couple small ones appeared. I will let you know how he responds to the double dose of Avastin. He received his second treatment yesterday.

When we found out in October, it was already in stage 4. He felt fine at the time of diagnosis and did not start feeling bad until 2 months ago. This is a strange and aggressive cancer, but we have hope.

The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers. Read the full disclaimer.